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BENEFITS FOR PEOPLE WITH ME/CFS Obtaining benefits for people with ME has always been a lottery and, since the introduction of Employment and Support Allowance in 2008, obtaining benefits has become even more complicated. Furthermore, the 2010 Tory-LibDem coalition has announced plans to radically reduce the number of people claiming incapacity benefits and to introduce a medical test for the main disability benefit, Disability Living Allowance (DLA), which is to be replaced with a "Personal Independence Payment". Work and Pensions Secretary, Iain Duncan Smith, has sinced announced that all incapacity benefits will be replaced by "universal credit" and has set a target of reducing the number of people claiming the main disability benefit, DLA, by 20%. The media have run a stream of stories about "lazy", "workshy", "scroungers and cheats" on the back of government press releases -- yet the fact is that only 0.5% of DLA claims are fraudulent ... and generally only because someone has not reported a change of circumstances to the Department for Work and Pensions (DWP) Worse still, the new updated Work Capabiltiy Assessment (WCA) and ESA50 medical questionnaire have been made so tough that even if you can't walk you can be found fit for work. If you can "mobilise" in a manual wheelchair, you can be denied the new Employment and Support Allowance (ESA) and forced onto Job Seekers Allowance (JSA) and back to work. However don't worry, because there are a number of excellent sources of information both online and to order, especially the Disability Alliance's "Disability Rights Handbook" (more later) and "ESA Guide" (more later) and the 2010/11 MIND "Big Book of Benefits and Mental Health", which despite its name, has some of the most useful information about both physical and mental health claims available to date and also the "Benefits and Work" website (via a subscription - more later). There is also excellent information available from the main ME charities and Welfare Rights - about which more later. Benefits and work are constantly changing so this basic guide aims to introduce you quickly to the main benefits and then links in detail to the many resources which can help you successfully make a claim to maximise your entitlements. The first thing to say is that ideally you will seek help from Lancashire Welfare Rights Service or Citzens' Advice. We have found that Lancashire Welfare Rights Service does not provide any information online and therefore we would also refer you to Newcastle Welfare Rights: Lancashire Welfare Rights Service Citizens' Advice - online advice guide and local CABX contacts Newcastle Welfare Rights Disability Benefits For exisiting claimants, there are two main benefits - Incapacity Benefit (or Income Support because of incapacity for work) and Disability Living Allowance (DLA). For new claimants, you will sadly have to claim Employment Support Allowance (income or contribution based) and/or DLA. Incapacity Benefit/Income Support Until October 2008 this was the main sickness benefit for people of working age. It has now been replaced by the Employment and Support Allowance (see below). Existing claimants will be moved onto ESA in stages before 2013, and Burnley was the first area in the country where this was piloted. It's now being rolled out nationwide. The main sources online of information about IB/IS are as follows: Benefits and Work - IB/IS Newcastle Welfare Rights - IB Newcastle Welfare Rights - IS There is more information under "Further Reading" below. Disability Living Allowance/Attendance Allowance Disability Living Allowance (DLA) for people making a claim before their 65th birthdays, or Attendance Allowance (AA) for those over 65 when they claim, is the main disability benefit, designed to offer extra money for care or mobility problems or needs and, for those on the higher rate of mobility, can provide a free car instead of the mobility component, modified if necessary to take a wheelchair or scooter, for three years at a time (although the claim can be reviewed at any time). Note however that the Government has announced plans to scrap AA, and replace it with a council-run scheme: plans opposed by most disability charities. In the 2010 emergency budget, plans were unveiled for a new medical test to be applied from 2013 for all new and existing claimants, provoking much criticism from support groups and disability organisations. It is thought this is likely to be based on the radical new Work Capability Assessment. There are plans to scrap DLA and replace it with PIP - Personal Independence Payment - after 2015. DLA comes in two main categories - care and mobility. You may receive the lower, middle or higher rate of care, and the lower or higher rate of mobility (there is no middle rate for mobility) depending on how your needs are assessed. You may need to attend a medical. The main sources online of information about DLA/AA are: Action for ME PDFs on DLA Benefits and Work - DLA Newcastle Welfare Rights - DLA There is more information under "Further Reading" below. Employment and Support Allowance This badly designed benefit replaced IB/IS for new claimants of working age in late 2008, and comes in two forms - income based ESA (replaces Income Support) and contribution based ESA (replaces Incapacity Benefit). The Department for Work and Pensions (DWP's) website explains the history and aims of the benefit. The previous Labour government announced plans to migrate people claiming Income Support and Incapacity Benefit to ESA by 2013 and this is now underway. This is such a controversial benefit, with many sanctions and appeals processes, and is based on the concept that, after a mandatory assessment phase with "work focused interviews", most people with disabilities should be encouraged to work, and will be placed in the "work related activity group", whereas only about 10% will be placed in the "support group" and allowed to claim benefit without doing any sort of work. It is clear from local support groups, and from the author's own experience, that most people with ME are desperate to work, but very many simply cannot cope with working, because they are simply too ill, or have such wide fluctuations in their symptoms that no employer is likely to keep them on, or they have psychiatric comorbidity (usually reactive depression, particularly in young people). Support groups are concerned that people will be forced into work, who are far too ill, especially the moderately, as opposed to mildly or severely disabled, for whom the "work related activity group" and "support group" might be reasonably well suited. There is a vast and increasing amount of information on ESA and specific information about ESA and ME/CFS on the web: Action for ME - ESA info sheet and how to keep a symptom diary for ESA claims Disability Alliance - extensive guides to claiming ESA National Association of Welfare Rights Advisors Rethink National Advice and Information Service Benefits and Work - ESA Newcastle Welfare Rights - ESA Homepage DWP - ESA It is early days for most people claiming this controversial benefit and online sources are constantly being updated - especially Newcastle Welfare Rights and Benefits and Work. Further Reading There are some truly amazing publications from leading charities and organisations which are handbooks in every advice service and have successfully helped many people in East Lancashire to navigate the benefits system. Some of the main ones are: Disability Rights Handbook This excellent book including IB/IS, DLA and ESA, is updated annually and costs 27.50 pounds (or 12 if you are already on benefits) and can be ordered below: Order Now from Disability Alliance ESA Guide Disability Alliance's excellent guide to ESA (April 2011) and claiming. It's 10 pounds or 5.50 if you claim a benefit already: Order Now from Disability Alliance Big Book of Benefits and Mental Health 2010/11 Don't be put off by the title of this book as it has full coverage of physical as well as psychological factors affecting IB/IS, DLA and ESA claims, plus sample forms and advice on how to fill out claims. It costs 15 pounds plus 1.50 P&P. It is written by Judy Stenger, a leading expert on Welfare Rights, who also writes for magazines about updates to disabilty benefits and case law. Order from MIND's national website *new* Action for ME Action for ME's information service provides ME-specific diaries and detailed guidance on medicals and claims for all major benefits via its publications service. Download publications now ME Association The ME Association offers a large numbers of publications about claiming all major benefits, with detailed advice and guidance. Most benefits sheets cost 3 pounds, to both members and non-members. A publications catalogue is in the centre of ME Essential magazine, each edition, or below on the web: Download publications list and order by cheque Additional Online Resources JobCentrePlus - guide to benefits Direct.gov - guide to Disability and disability benefits Newcastle Welfare Rights - A-Z of benefits Lancashire Welfare Rights - offices and phone nos Blackburn with Darwen Council - Advice Disclaimer This document was written by Ian Birch at the East Lancs ME/CFS Online Resource and was last updated in April 2011. You may freely copy or distribute this document so long as the credits and website address are given. Please note that nothing herein should constitute advice or legal opinion and Ian Birch and the East Lancs ME/CFS Online Resource cannot take any responsibility or liability for any claims or other actions you may take as a result of this web page or any source of information mentioned or linked to.